Purpose: The purpose of the article is to present standard set of outcomes for people with personality disorder (PD), in order to facilitate patient outcome measurement worldwide.Methods: The International Consortium for Health Outcomes Measurement (ICHOM) gathered a multidisciplinary international working group, consisting of 16 experts, including clinicians, nurses, psychologists, methodologists and patient representatives, to develop a standard set of outcome measures for people with PD. The Delphi method was used to reach consensus on the scope of the set, outcome domains, outcome measures, case-mix variables and time points for measuring outcomes in service users. For each phase, a project team prepared materials based on systematic literature reviews and consultations with experts.Results: The working group decided to include PD, as defined by International Classification of Diseases 11th revision (ICD-11). Eleven core outcomes and three optional outcomes across four health domains (mental health, behaviour, functioning and recovery) were defined as those relevant for people with PD. Validated measures for the selected outcomes were selected, some covering more than one outcome. Case-mix variables were aligned to other ICHOM mental health standard sets and consisted of demographic factors and those related to the treatment that people received. The group recommended that most outcomes are measured at baseline and annually.Conclusion: The international minimum standard set of outcomes has the potential to improve clinical decision making through systematic measurement and comparability. This will be key in improving the standard of health care for people with PD across the world.

Background A value set for the EuroQoL 5-Dimensions (EQ-5D)-Y in Slovenia is not yet available, making the calculation of quality-adjusted life-years (QALYs) for children and adolescents using this generic instrument impossible. Objective The main objective of our study was to obtain adult preferences towards EQ-5D-Y health states in Slovenia, following the EQ-5D-Y-3L international valuation protocol. The adults were asked to take the perspective of a hypothetical 10-year-old child. Method A sample of 1074 adults in Slovenia completed an online discrete-choice experiment (DCE) survey on EQ-5D-Y health states. The latent scale issue was addressed by obtaining the value of the anchor (33333) with 200 composite time trade-off (cTTO) interviews. A mixed (random coefficients) logit model was used to estimate the value set. Results All the estimated coefficients of the mixed logit model were statistically significant at the 1% level and had an expected negative sign. The most important health dimension in EQ-5D-Y is pain/discomfort, followed by anxiety/depression, usual activities, and mobility, with self-care being the least important health dimension. Conclusions The study addresses an important research gap and presents the EQ-5D-Y value set for Slovenia. At the time of writing, no published value sets are available for the EQ-5D-Y-3L appropriate for use in QALY calculations, making this value set the first EQ-5D-Y value set in the world.

Background Demand is increasing for youth-specific preference-based health-related quality-of-life measures for inclusion in evaluations of healthcare interventions for children and adolescents. The EQ-5D-Youth (EQ-5D-Y) has the potential to become such a preference-based measure. Objective This study applied the recently published EQ-5D-Y valuation protocol to develop a German EQ-5D-Y value set and explored the differences between values given to youth health by parents and non-parents. Methods To elicit EQ-5D-Y health state preferences, a representative sample of 1030 adults of the general population completed a discrete choice experiment (DCE) online survey, and 215 adults participated in face-to-face interviews applying composite time trade-off (cTTO). Respondents were asked to consider a 10-year-old child living in the health states. DCE data were modelled using a mixed logit model. To derive the value set, DCE latent scale values were anchored onto adjusted mean cTTO values using a linear mapping approach. Results Adult respondents considered pain/discomfort and feeling worried/sad/unhappy as the two most important dimensions in terms of youth health. Adjusted mean cTTO values ranged from − 0.350 for health state 33333 to 0.970 for health state 21111. The EQ-5D-Y value set showed a logical order for all parameter estimates, and predicted values ranged from − 0.283 to 1. Differences in preferences by parental status were mainly observed for cTTO results, where mean values were larger for parents than for non-parents. Conclusions Applying the valuation protocol, a German EQ-5D-Y value set with internally consistent coefficients was developed. This enables the instrument to be used in economic evaluations of paediatric healthcare interventions.

Background: The study aims to present Slovenian EQ-5D-5L population norms for different age and gender subgroups that can be used as reference values in future studies concerning health status. The secondary aim is to compare those norms with population norms from some other countries in Europe and elsewhere. Methods: The cross-sectional survey was conducted between November 2019 and February 2020 via online panel. 1071 adults aged 18+ were included in the survey. The general population was sampled using quota sampling in terms of age, gender, and NUTS2 region. In the study, the EQ-5D-5L Slovenian online version was used. Descriptive statistics was used to present health status by age groups and genders for the EQ-5D-5L descriptive system, EQ VAS and the EQ-5D-5L index score. The latter was derived from Slovenian EQ-3D-3L tariff, transformed to five levels using the crosswalk methodology. Results: The mean EQ VAS score in the Slovenian population was 79.9, mean utility index was 0.808. 28.2% of the population did not have problems on any dimension and 3.9% of the population had problems on all dimensions. Persons residing in Western Slovenia had, on average, 0.016 higher utility score, compared to Eastern Slovenia. Effect of gender was not significant. Age was negatively associated with both utility index and EQ VAS score. Education was positively correlated to health status. Problems on dimensions were generally increasing with age, except for anxiety/depression dimension, where youngest group (ages 18–29) reported more anxiety/depression compared to older counterparts. Self-reported anxiety/depression was more pronounced in women. Conclusions: Similarly to other countries, the health generally deteriorates with age, except for the anxiety/depression dimension where the share of respondents reporting no problems was lowest in the youngest age group. The open question for the future remains, whether population norms from this online sample differ significantly from the actual EQ-5D-5L health status data of the Slovenian general population.

Health systems worldwide struggle to manage the growing burden of type 2 diabetes and hypertension. Many patients receive suboptimal care, especially those most vulnerable. An evidence-based Integrated Care Package (ICP) with primary care-based diagnosis, treatment, education and self-management support and collaboration, leads to better health outcomes, but there is little knowledge of how to scale-up. The Scale-up integrated care for diabetes and hypertension project (SCUBY) aims to address this problem by roadmaps for scaling-up ICP in different types of health systems: a developing health system in a lower middle-income country (Cambodia); a centrally steered health system in a high-income country (Slovenia); and a publicly funded highly privatised health-care health system in a high-income country (Belgium). In a quasi-experimental multi-case design, country-specific scale-up strategies are developed, implemented and evaluated. A three-dimensional framework assesses scale-up along three axes: (1) increase in population coverage; (2) expansion of the ICP package; and (3) integration into the health system. The study includes a formative, intervention and evaluation phase. The intervention entails the development and implementation of an improved scale-up strategy through a roadmap with a minimum dataset to monitor proximal and distal outcomes. The SCUBY project is expected to result in three different roadmaps, tailored to the specific health system and country context, to progress scale-up of the ICP along three dimensions. These roadmaps can be adapted to other health systems with similar typology. Implementation is expected to increase the number of well-controlled patients with type 2 diabetes and hypertension in Cambodia, to reduce inequities in care and increase patient empowerment in Belgium and Slovenia.

Background We aimed to investigate the burden of informal care in Hungary (HU), Poland (PL) and Slovenia (SI). Methods A cross-sectional online survey was performed involving representative samples of 1000 respondents per country. Caregiving situations were explored; health status of informal caregivers/care recipients and care-related quality of life were assessed using the EQ-5D-5L and CarerQol-7D. Results The proportion of caregivers was (HU/PL/SI) 14.9, 15.0 and 9.6%, respectively. Their mean age was 56.1, 45.6 and 48.0, and the average time spent on informal care was 27.6, 35.5 and 28.8 h/week. Chronic care was dominant (> 1 year: 78.5%, 72.0%, 74.0%) and care recipients were mainly (own/in-law) parents. Average EQ-5D-5L scores of care recipients were 0.53, 0.49 and 0.52. For Poland and Slovenia, EQ-5D-5L scores of informal care providers were significantly lower than of other respondents. Average CarerQol-7D scores were (HU/PL/SI) 76.0, 69.6 and 70.9, and CarerQol-VAS was 6.8, 6.4 and 6.6, respectively. Overall, 89, 87, and 84% of caregivers felt some or a lot fulfilment related to caring. Problems with combining tasks with daily activities were most important in Hungary and Slovenia. Women had a higher probability of being a caregiver in Hungary. CarerQol-7D scores were significantly associated with caregivers’ EQ-5D-5L scores. In Hungary and Poland, living in a larger household was positively, while caring for patients with mental health problems was negatively associated with CarerQol-7D scores. Conclusions These first results from the Central and Eastern European region using preference-based measures for the evaluation of informal care can serve as a valuable input for health economic analyses.